Lucie, Marco and Antony’s story

Lucie, Marco and Antony’s story

Antony was 3 months old when a red patch appeared on his cheek. We were given some cream and told to keep an eye on it. Little did we know this was just the start of countless prescriptions for creams, steroids and antibiotics over the coming months.

We put the cream on but the patch on his cheek kept on getting bigger and then it started on the other cheek. After the first course of antibiotics and steroid cream it cleared for two days but then it came back worse than ever and his scalp started to weep all-over. We didn’t know what to do.

We had so many trips to the GP and felt so helpless. Looking at his skin weeping and so red was heart-breaking. All I could think about was what is causing this? I asked GPs about whether it could be a food allergy but they all said ‘no’ and that he will hopefully grow out of it. We were using cotton clothes and were only washing him with water, what could be making it so bad?

After three rounds of antibiotics over a matter of weeks and still no improvement we were finally referred to Dermatology. Initially we felt a massive relief that finally we would get to see a specialist but we didn’t realise we’d have to wait so long for the appointment.

I felt like I was drowning – I was a new parent trying to get to grips with having a baby but also trying to deal with the eczema on top. Nobody explained why and how to care for it and I felt like GPs thought I was a hysterical first-time Mum. The infections, sleepless nights and seeing my baby clawing at his face was horrendous.

My Health Visitor suggested I contact Eczema Outreach Support and it was amazing to have people who understood and really listened to my concerns. I went to some of their events and being able to listen to the talks from nurses was really important to me because I didn’t have any family experience of eczema.

While we were waiting on the Dermatology appointment I tried Antony with formula milk because I was going back to work. The second time I gave it to him he took an immediate allergic reaction – his lips swelled and it was absolutely terrifying. We were taken into hospital for 3 days and he was diagnosed with food allergies including milk, egg, nuts and a whole host of other things. I couldn’t believe I had been dismissed so many times at the GP when I’d asked about a food allergy and it took Antony to take an anaphylactic reaction for it to be taken seriously.

At this point we decided to take Antony to a private Dermatology appointment because we just couldn’t wait for the NHS appointment any longer. Watching him suffer was too much. He prescribed a solution for his head that definitely made a difference but I was disappointed that it was just more creams and no real explanation about how best to treat eczema or trying to get to the bottom of what was causing it beyond the food allergies we now knew about.

After a six month wait our NHS Dermatology appointment finally came and it was only after this did his skin turn a corner. The nurses were absolutely amazing – they introduced us to garments and ichthopaste bandaging, and they explained how best to care for Antony’s eczema.

We’re now at a point where we know what to do to manage his skin flares. We’ve been to hospital 3 more times with allergic reactions so there are still things we don’t understand but things are starting to feel more manageable.

The whole experience has felt like such a fight. Why should parents have to fight so much to get care for their child? The system is so frustrating and you have to keep going and be tough. At times I didn’t feel tough at all and I was in tears so many times. We felt so alone and that we were the only ones trying to get to the bottom of what was causing it.

My husband Marco was an amazing support, I couldn’t have got through it without him. He took over speaking to the GP when I felt like they were dismissing my worries, he helped with all the creams at night, and he was with me for all appointments.

If I could say something to other parents feeling helpless it would be to keep going and fight for what your child needs, ask for an emergency Dermatology appointment and if you feel there is a food allergy ask to be tested.

“I felt like I was drowning – I was a new parent trying to get to grips with having a baby but also trying to deal with the eczema on top.”

Eczema Outreach Support is registered with the Scottish Charity Regulator, charity number SC042392. Our head office is in Scotland, but we support families all over the UK. Address: 129, High Street, Linlithgow, EH49 7EJ, West Lothian